Survivorship
Survivorship is a beautiful, complicated, fragile, confusing, and empowering place along a cancer journey. If you’re unsure how to feel about survivorship, you’re not alone.
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Who is a cancer survivor?
Who gets to call themselves a cancer survivor? Someone with active disease? Someone finished with treatment? Someone in remission? A caregiver who lost a loved one? And are you still a cancer survivor if you die from cancer?
This is one of the hottest debates in the cancer community, and many opinions exist on when and who to call a cancer survivor.
While the term is regularly evaluated for its relevance in describing cancer patients, research shows that most patients like being called a survivor. To understand where and how this term originated, it’s important to know a little history.
Where did term “cancer survivor” come from?
Leading up to the 1970s, most people assumed cancer was contagious. Patients hid their diagnoses from people, as it meant they could lose their jobs and insurance, be barred from the military, and lose eligibility for several other circumstances. If people knew you had cancer, you may be served food on disposable plates and cups so your germs wouldn’t spread or kept at a physical distance from others. Cancer patients were often referred to as “cancer victims.”
In the early 1970s, Congress was working on a bill to add $1.3 billion into cancer research. Cancer was a bipartisan issue. On December 23, 1971, Nixon signed the National Cancer Act (and won reelection the following year). This “war on cancer” was a kickstart to improved treatment options and a gradual increase in survivorship.
Our partners at the National Coalition for Cancer Survivorship (NCCS) were instrumental in changing the perception of cancer patients. A group of 23 gathered in Albuquerque in October 1986. They would become the founders of the National Coalition for Cancer Survivorship (NCCS) and they gave post-treatment patients a name and defined survivorship:
“From the time of its discovery and for the balance of life, an individual diagnosed with cancer is a survivor.”
The term was widely accepted by those who’d previously referred to as “victims,” and over the years, it began to guide how others saw cancer patients.
How do other groups use the term survivor?
Most professional cancer societies have since adopted the NCCS guidance for how to define a cancer survivor:
NATIONAL CANCER INSTITUTE (NCI)
One who remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease. In cancer, a person is considered to be a survivor from the time of diagnosis until the end of life.
AMERICAN CANCER SOCIETY
Anyone who has ever been diagnosed with cancer no matter where they are in the course of their disease.
AMERICAN SOCIETY OF CLINICAL ONCOLOGY (ASCO)
A person who has had cancer. “Co-survivor” is sometimes used to describe a person who has cared for a loved one with cancer.
NATIONAL COALITION FOR CANCER SURVIVORSHIP (NCCS)*
From the time of its discovery and for the balance of life, an individual diagnosed with cancer is a survivor.
What’s involved in survivorship?
Survivorship is becoming a more established aspect of patient care, as the numbers of cancer survivors keep growing.
Here are the few phases cancer survivors may find themselves in:
Curative care
Survivors who are in active treatment with the intent to cure their cancer.
Maintenance therapy
Survivors who receive treatment to prevent a recurrence once the cancer has been cured. Usually this is a low-dose treatment.
"Chemo for life"
Some survivors are on “chemo for life.” This may also be called “palliative chemotherapy,” although it’s not the same as palliative care. Patients who are on “chemo for life” are typically taking treatment not to cure the disease, but to stabilize disease, keep it from growing, and/or to minimize side effects. Quality of life and extended survival is the goal of chemo for life.
Follow-up care
Some patients complete their treatment plans, receive follow-up tests and scans, and are declared “no evidence of disease” or NED. If you become NED, you will have a series of follow-up scans and tests, following treatment guidelines.
Part of follow-up care involves compiling a treatment summary and/or survivorship care plan.
Post-Treatment
The weeks following your last chemotherapy or radiation treatment can be jarring. Some oncology clinics help patients handle the transition better than others. But it’s not uncommon for you to feel a variety of emotions—good, bad and ugly.
During this time, some patients feel relieved while others feel a loss. Some feel free and grateful, while others struggle with survivor’s guilt and get very paranoid and nervous. All of this is typical, and it’s part of what’s called the “New Normal.”
Everyone copes with the new normal differently. The most important steps you can take are scheduling your follow-up appointments and relying on your team to help you navigate life outside of cancer treatments.
How do I maintain my health after treatment?
Research suggests that leading a healthy lifestyle can reduce the risk of colorectal cancer recurrence. Consider implementing these changes moving forward:
- Quit smoking
- Maintain a healthy weight
- Stay physically active
- Eliminate or reduce your alcohol intake
- Limit sun exposure
- Eat a healthy diet
While it’s easy to look at a list of lifestyle improvements and feel overwhelmed, try to take things one step at a time. Small, incremental changes that can be made to your daily routine are much more likely to stick than large, sweeping changes that upend your entire way of life.
Perspective
Cancer patients often find that their perspective on life has changed after receiving a diagnosis. You may find yourself searching for meaning or find that your priorities in life have shifted. Some may even find that a cancer diagnosis positively influence their perspective.
Focus on things that make you happy. If you’re looking to turn your experience into action, consider volunteering and/or becoming an advocate. Sharing your story can help others find resources in their time of need and help you find ways to “pay it forward.”
New Normal
The new normal is a phrase often used by cancer survivors. Due to significant life changes, many survivors struggle to adjust back to their pre-cancer self. The differences may be slight to the outsider but could be enough to affect the survivor’s sense of self.
Hear therapist and senior research coordinator, Jean Schleski, and stage II CRC survivor Tim Wright, for tips on how to manage the transition to the new normal in this episode of Taboo-ty.